Diaries share, and help resolve, secrets of the ICU

It sounds almost too simple to be true. What if the chance of an intensive care patient
developing post-traumatic stress disorder (which a growing body of research has shown
to be a significant risk) could be reduced with just a pen and a camera?

That's effectively what a recent European randomized controlled trial of 352 patients
found. While the patients were in the ICU, hospital staff (including physicians and
nurses) and family members kept a daily diary, including photographs, that described
all aspects of the patient's hospital stay, from medical events like an extubation
to friends and family who visited.

Photo courtesy of Richard D. Griffiths, MD.

A month after discharge, half of the patients were invited to receive a copy of their
diary, with an explanation by a nurse or physician. At three months after discharge,
all patients were assessed for post-traumatic stress disorder (PTSD). Only 5% of the
patients who had received their diaries had developed new cases of PTSD, compared
to 13% of controls. After the PTSD assessment, the controls were also provided with
their diaries.

Study authors Christina Jones, PhD, Richard D. Griffiths, MD, and colleagues concluded
that the diaries were effective in aiding the psychological recovery of ICU patients
and reducing PTSD incidence, and their results were published in Critical Care in September 2010. Dr. Griffiths, professor of medicine at the University of Liverpool,
recently spoke with ACP Hospitalist about the success of the project and its potential application in other intensive
care units.

Q: What's the typical content of an ICU diary?

A: It is a lay record of events, progress and news while in ICU. It is started by the
nurses with a description in lay terms of why the patient was admitted and what is
happening. A photo taken early often needs explaining—what all the tubes and
machines are, for instance. Essentially it is what the nurse explains to the relatives
and would have explained, if possible, to the patient.

Later on it contains events, news, comments—depends on what the nurse or the
relatives or others wish to write. It is part of the therapy to engage the diary writing
and its ownership with the relatives so they feel they also contribute to the record,
e.g., watched Liverpool beat Manchester United yesterday. Some close partners do the
most writing while others leave it to the nurses.

Q: How much time does the diary-keeping take?

A: It does not take very long except at the beginning. On long-stay patients, it may
simply be something interesting that happened, e.g., had a tracheostomy or was sat
up today.

Q: What's been the response by nurses to this assignment?

A: This has changed and depends on the nurse and the understanding of its purpose. The
biggest problem was the fear of the legal status and what might be written. Once we
pointed out that it has the same legal status as any medical or nursing notes and
that honesty and real-time records are best, this fear went. If things go wrong, having
the diary does not make matters worse.

Q: How did the results of the study compare to your expectations?

A: We formally tested the diary because observation in an earlier study had suggested
they might be having an influence and needed to be tested formally in a randomized
study. Clinical feedback from relatives also suggested they found it of benefit.

Q: If one were to use the diaries in practice, should particular patient populations
be targeted?

A: We and many units in Europe use the diaries already in practice for some years, but
this is the first time they have been rigorously tested to show a specific benefit
apart from simple patient appreciation. The approach is targeted to those who seem
likely to have a prolonged stay, as it is doubtful the diaries would be of benefit
for the majority of patients who only stay a few days.

Q: Are there any risks to using the diaries?

A: None that have arisen. One must have a system that ensures confidentiality and consent
and security of the document. We keep ours for more than a year because of the few
patients who decline taking the diary. Some have returned on the anniversary seeking
the diary.

Q: Your study provided patients with the diaries at one month. Is that the ideal interval?

A: We used one month for the purpose of testing its prevention of PTSD. Leaving it too
late will allow PTSD to become established. In practical terms this is often about
the right time but it depends on the patient's wishes: some earlier, some later.

Q: In the study, most diaries were provided in a face-to-face meeting between the patient
and a research nurse or doctor. Would it be possible to get the benefits of the diaries
without the extended follow-up—for example, by providing them to caregivers
at discharge?

A: Yes, but a diary is only part of rehabilitation for these patients and leaving them
with only the diary is simply not enough.

Q: Any other advice for physicians interested in this intervention?

A: It is simple but highly effective and treats not only the patient but also the symptoms
in the relatives. We currently have a paper in preparation describing the benefits
observed in a small group of the relatives involved in this study.

ICU diary guidelines

Following are selected guidelines used in Whiston Hospital, England, for ICU diaries:

Avoid including information that could be of a sensitive nature, or that a patient
may wish to keep confidential. Examples include malignancy, HIV status, sexuality
or substance abuse.

Entries should be made daily as much as possible and when there is a significant event
or milestone to write about. Examples include extubation, a tracheostomy procedure,
and sitting out of bed for the first time. If progress is slow, still try to make
regular entries. If a patient is restless, write about this as they may remember hallucinations
from this period.

Include relatives. Give them an information sheet about the diaries. Encourage them
to write to say that they have been visiting. They may wish to include what has happened
at home or anything that the patient has a particular interest in.

Avoid jargon and abbreviations. Use laymen's terms when describing clinical terminology
for the first time in the diary. Try to relate what you write to how you would normally
verbalize the information to a patient or relative.

The writing style should always be professional and relevant. As much care and consideration
should be taken with diary entries as with any other form of professional documentation.

ACP Hospitalist provides news and information for hospitalists, covering the major issues in the field. All published material, which is covered by copyright, represents the views of the contributor and does not reflect the opinion of the American College of Physicians or any other institution unless clearly stated.